One of Disability Studies’ major hang-ups is its default position with respect to the field of medicine and—by extension—with medical practitioners. The adversarial stance of DS towards medicine (and doctors) stems largely from the former’s repudiation of the medical model of disability, according to which—as defined by Disability Studies scholars—individual disabled people are identified as “problems” to be “fixed” or “cured.” [1]

Before I dive into my discussion on DS’s positions vis-a-vis “the medical model,” I’d like to clarify that in my own work I make no distinction between “impairment” and “disability,” preferring instead to utilize “disability” to designate the complex matrix of physical/material and socio-cultural phenomena that together produce conditions of disablement for some people. [2]

The main issues that I have with Disability Studies’ framing of “the medical model” in its current incarnation is that it presumes the following:

Medicine and physicians are always paternalistic.

Recipients of “medical care” are always “passive” and “disempowered.”

There is no gray area between the extremes of “cure” and “do nothing” when it comes to medicine.

The Democracy Disability and Society Group graphic includes both “impairments” (aka “disabilities”) and “chronic illness,” but I’m puzzled as to why they occupy separate categories considering chronic illnesses are in fact disabilities. A disability (again, the graphic uses “impairment” to denote what I call “disability”) is quite simply a mode of functioning that differs from that of the majority of people. For instance: if the majority of people have 2 legs, then having only 1 leg is a “disability” because it involves a physical form (and consequently a mode of ambulation) that differs from that of the majority of the population. If most people do not perceive sights and sounds as overstimulating but someone with Autism does, then Autism is a disability because it involves sensory/cognitive processing modes that differ from those of the majority. It logically follows that if most people have immune systems characterized by a common baseline level of inflammation, people with immune systems characterized by higher-than-average inflammation levels (manifesting in a variety of conditions with names like MS, Rheumatoid Arthritis, Chron’s, etc.) are configured immunologically in a way that differs from the majority of the population and consequently must operate differently from their immunologically “standard” counterparts. In other words: yes, chronic illness (defined as “ongoing immunological inflammation that differs from that found in the majority of the population”) is a disability.

A couple of factors contribute to the “classical” separation within DS between “chronic illness” and “disability.” As shown in the graphic, disability is traditionally viewed as a “physical, mental, [or] sensory” difference, but overwhelmingly “mere” physical differences are prized, with the “ideal” disabled person being an “otherwise healthy” individual with a motor impairment (i.e. – missing limb, spinal cord injury, war trauma, etc.) necessitating either a wheelchair or prosthesis. Within the hierarchy of disability—yes, there is a hierarchy—Deaf and blind people are also prized, since they are “otherwise healthy.” [4] A quick Google image search of the keyword “disability,” while admittedly not scientifically rigorous, provides a terrific example of the hierarchy of disability at play.

My proposal is that this emphasis on “health” as the standard by which people are included or excluded as “disabled” is as outdated as the paternalistic style of medical practice. By emphasizing the image of disability as “mere” physical variation in “otherwise healthy” individuals, Disability Studies is very problematically helping to enshrine the ideal of “health” as well as colluding in the over-arching cultural rhetoric of “health as morality,” wherein immunological variation is code for “immorality” and even “inferiority.” By clinging to mainstream ideals of “health,” Disability Studies works to achieve greater equality for some disabled people by actively oppressing others. For a field allegedly committed to social justice and equality, upholding this kind of hierarchy of oppression is unacceptable.

Because chronic illnesses are many times imperceptible [5], they tend to be overlooked by the general public (including the DS community), and this lack of perception seems to be the second key determinant—besides the prevailing rhetoric of “health”—in their exclusion from disability and Disability Studies. Everyone knows when a paraplegic person enters the room: he’s using a wheelchair. The Deaf person, in signing, not only communicates but also performs his or her Deafness. The blind person with a cane or dark glasses is identifiable as blind. Being identifiable, even by laypeople, as disabled is important to the validation of “disability identity” precisely because of DS’s internalization of cultural ideals of “health.” Disability Studies’ idealization of “health” and its emphasis on perceptible forms of disability are inextricably intertwined.

In contrast with “classically” acknowledged forms of disability like Deafness, blindness, using a wheelchair or prosthesis, etc., chronic illnesses are often not perceptible to the general public. The crucial point here is thatchronic illnesses are frequently only perceived (and perceptible) by *medical* professionals—and even thenindirectly, via analysis of complex physical exams, blood work, and so forth. They are thus prone to being reflexively (if incorrectly) “medicalized” by default and rejected by DS scholars and activists as “something other than disability.”

It is both poignant and ironic that, while people with perceptible disabilities are more likely to suffer discrimination and exclusion by the non-disabled public by virtue of their disabilities being perceptible, people with imperceptible disabilities (such as chronic illnesses) are routinely excluded from Disability Studies as “other-than-disabled” or “non-disabled” for (in part) the opposite reason. [6]

Disability Studies’ rejection of “the medical model,” combined with immunologically disabled people’s configuration or placement within that model, contribute to conditions that foster the exclusion of chronically ill people from disability and from DS. DS “needs” to reject chronically ill people because it “needs” to reject “the medical model,” and chronically ill people are stubbornly enmeshed within that model. Chronically ill people are treated by the field as “the problem” in need of “cure” or “fixing”—and this “cure” or “fix” is accomplished through segregation, which takes the form of exclusion from the category of “disability.” Oh what a tangled web we weave when nearly an entire field uses the very same working model it claims to loathe as a virtual blueprint for casting off certain members of its own group! [7]

Instead of rejecting chronic illness as “not disability” simply because it doesn’t fit into the established paradigm of “the medical model of disability” as formulated by Disability Studies scholars and activists, what if we flipped the lens? What if we asked what recognizing chronic illness as a disability could potentially do for our existing understanding of “the medical model of disability”?

One of the first shifts that would occur would pertain to our views on medicine, medical care, and physician-patient relationships. The experiences of people with chronic illnesses (aka “immunological disabilities”) in the realm of medicine often bear little resemblance to the invariably negative and fatalistic views of medicine propagated by leading DS scholars. For starters, since chronic illnesses are not “curable,” there tends to be minimal—if any—fixation on the notion of “cure” on the part of the physician. When and if an insistence on “cure” does occur, it is generally on the part of the chronically ill person, and my argument would be that it is because that particular person has been indoctrinated into the rhetoric of “cure” by organizations like the National MS Society, theArthritis Foundation, etc. (and on a larger scale, by contemporary society’s worship of “health”). This is no different than an individual paraplegic person expressing his/her desire to not be paraplegic, or an individual blind person maintaining that they would prefer to be sighted. What is different is that chronically ill people receive far less support from the general public should they choose not to oppose the rhetoric of “cure,” coupled with far more (organizational and social) pressure to adhere to this harmful rhetoric. If charities and organizations such as the NMSS and the AF continue to foster the idea that chronic illness is an “evil” and that “cure” is the only solution, then many chronically ill people will continue to succumb to pressure to internalize these views, even if it proves disempowering and unproductive.

The relationships between chronically ill (aka “immunologically disabled”) people and their physicians are typically long-term ones that emphasize continuity of care, partnership, interdependence, and support. Far from being “passive recipients” of care, we are engaged participants in a dynamic that contributes to our own care and that of others. Far from having “cure” (or even “treatment”) imposed on us, we are empowered to provide input regarding how we would like to approach our disability (and how we would like others, including our doctors, to approach it). Notice that I deliberately use terms like “care” and “approach to” instead of “cure” or “fix.” The latter terms simply fail to describe my experience within the context of medicine, and so I avoid them.

An immunomodulatory drug—the type of drug most people with immunological disabilities use—is best viewed as a prosthesis. In The End of Normal: Identity in a Biocultural Era, Lennard Davis affirms: “A drug would be a prosthesis if it restored or imitated some primary state that appears to be natural and useful” (64). Davis makes this statement in the context of his argument that SSRIs are not “chemical prostheses” for depression, since happiness is not a “primary state” of being and since there is compelling evidence to suggest that SSRIs do not actually work (Davis 55-60). His assertion is relevant to my position in this blog post since, unlike SSRIs, immunomodulatory drugs do “restor[e] or imitat[e] some primary state” (levels of immunological inflammation and patterns of immunological behavior more consistent with those of people without autoimmune conditions) that “appea[r] to be natural and useful” (“natural” in the sense that these altered levels and patterns are consistent with those of people without autoimmune conditions, and “useful” in that they restore—to one an extent or another—“normal” immunological function in individuals with altered patterns of immune activity). Like a paraplegic deciding which model of wheelchair to use or an amputee picking the perfect prosthesis, we with chronic immunological conditions have input into which (if any) immunomodulator to use. If the chosen prosthesis (wheelchair, artificial limb, chemical compound) turns out to be ineffective or uncomfortable, we can choose a different one.

Interestingly, because specialists who care for patients with a particular condition (like Multiple Sclerosis or Chron’s) often maintain active research agendas that focus on the condition in which they specialize, their relationships with patients are best characterized as mutually interdependent. The physician needs the patient (or at least some patients) to consent to participating in clinical trials and providing data that will facilitate the physician’s own research, while the patient needs the physician to not only periodically assess his or her function, but also to prescribe (or provide access to) what are in effect chemical prosthetics that enable “normal” function.

The fact that these chemical prostheses are not accessible without recourse to a physician is arbitrary. By this I mean that it is not difficult to imagine an alternate capitalist universe in which 3D printers (with which wheelchair users can now print portable ramps) or even Braille are made for “limited use only” and controlled as tightly as immunomodulatory drugs are now. Wheelchair users got lucky in that they don’t require a new prescription every 30 days and a “co-pay” (imagine a monthly “user’s fee” for a wheelchair) to access the adaptive technology that is their wheelchair or 3D printer. Blind people got lucky in that they don’t require “prior authorization” to use Braille. There is nothing “special” about immunomodulatory drugs—meaning, nothing inherent in the drugs themselves or even the delivery system—that somehow makes them “medical” in contrast to so-called “non-medical” tech like 3D printers, Braille, and wheelchairs. It just worked out that groups of people figured out how to manufacture, control, and ultimately profit off of immunomodulatory drugs before they figured out how to do the same with Braille or 3D printers. Or maybe they figured out ways to make immunomodulatory drugs more profitable than Braille or 3D printers. It doesn’t matter. My point is that immunological prostheses are no more “inherently medical” than any other prostheses. They became medicalized because certain people figured out how to profit off of them by tying them into the established medical system. This is utterly random.

Given the randomness of the system in place; the evolving role of physicians (with shifts toward “patient-centered care” instead of “paternalistic medicine” and relationships of mutual interdependence between both parties rather than unilateral dependence running from patient to physician only); and medicine’s accepted position as an intermediary which, for some disabled people, controls access to certain types of chemical prostheses that have been arbitrarily classified as “medical,” it seems to me that it might be high time to question and, indeed, to complicate Disability Studies’ relationship to medicine. To move forward with such a paradigm shift, the field needs to stop medicalizing chronic illness. It needs to stop labeling people with chronic illnesses (immunological disabilities) as a “problem” in need of “curing” or “fixing” through exclusion from the category of “disability.” It needs to take another look at the so-called “medical model”—one it mimics in its treatment of the chronically ill while simultaneously decrying as “undesirable” for all other disabled people. To do this, the field will need to confront its existing hierarchy of disability and seek to trouble the notion that a disability must be perceptible to laypeople in order to “count.” But most importantly, Disability Studies will need to acknowledge that its “medical model of disability” no longer corresponds to the out-dated “medical model” of medicine on which it is based—and that the widening gap between the two threatens to quash the growth of the field.

[***FIRST DRAFT: WEDNESDAY, JUNE 11th, 2014. 23:01H EDT***]

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Notes

1 – I specifically add the clumsy verbiage “as defined by Disability Studies scholars” to emphasize that medical professionals themselves would be unlikely to identify with this view of their own profession. As such, “the medical model of disability” needs to be understood within the context of its formulation by DS scholars and activists. The “model” is not neutral or objective; it is a specific framing of the field of medicine and of medical professionals by people with disabilities and/or their allies, many of whom aggressively oppose any kind of “medical” intervention.

For further reading and some helpful diagrams illustrating differences between “medical” and “social” models of disability, please consult the following pages:

2 – For an expanded discussion of my views on the “impairment/disability binary,” see this thread and this document (especially pages 2-3 and notes on page 20).

3 – The NY Times piece is by a cardiologist who discusses grappling with tensions between paternalism and autonomy, and the Forbes article is by a physician criticizing what she refers to as “dinosaur physicians”—that is “old guard” M.D.s who still practice rigidly paternalistic medicine.

4 – Many Deaf people do not view themselves as disabled, since Deafness can also be conceptualized as a cultural and linguistic difference rather than a “disability” per se.

5 – “(Im)perceptible disabilities” is a phrase coined by Stephanie Kerschbaum as a preferable alternative to the ocularcentric “(in)visible disabilities.”

6 – “In part” because DS’s enshrinement of “health” should not be underestimated as a motivating factor in the exclusion of chronically ill people, either.

7 – When scholars within DS do write about medicine, they tend to focus on eugenics, end-of-life care, and assisted suicide, thereby perpetuating the stereotype that medicine equals “sickness and death only.” See recent work by Lennard Davis (The End of Normal: Identity in a Biocultural Era, 2013), especially Chapter 7 and Tom Shakespeare (Disability Rights and Wrongs, 2006), especially Part II.

What do you think of the distinction that Susan Wendell uses between “healthy disabled” and “unhealthy disabled”? Is this a helpful model in distinguishing between disability and illness? I ask, in part, because I am curious as to what you think this does with respect to the idea/ideal of “healthy.”

(I’ll preface this by I’ve discussed this with Wendell herself via email.) I don’t agree with that distinction since it does nothing to challenge the socio-cultural ideal of “health” and works to uphold (rather than deconstructing) the alleged “differences” between disability and chronic illness. In my opinion, the distinction really does not do anything in particular to the idea/ideal of “healthy”—-if anything, it reinforces that ideal. For if “healthy” were not prized over “unhealthy,” why would the distinction be required at all? In short: Wendell and I do not agree on this one….

That’s what I would have thought. It’s something I’ve been thinking about since you and I spoke about inhalers. The more I talk to you, the more I read…the more I find myself going back and rethinking my own medical history. I have no concrete thoughts yet, but I very much enjoy reading your posts and working through things.

There’s an article – Distinctly Disabled, http://disabilitynow.org.uk/article/distinctly-disabled ) by the UK disability academic Mike Oliver in which he tries to argue that disabled people (by which he clearly means the traditional wheelchair/amputee/blind disabilities), should dump the chronic illness disabilities (Crohns, MS, CFS, etc) so that the current government’s attack on them doesn’t drag down all disabled people. Needless to say those of us who fall in the second camp weren’t impressed, so count me as not just not agreeing with a health/unhealthy distinction, but finding it actively dangerous.

Wish you were here at SDS. These kind of conversations will be going on in the translational strand on disability studies and the health sciences: disability / chronic conditions, the plurality of clinical models, and also the experiences of disabled clinicians.

Luckily I am on Twitter, so it’ll be the next best thing to me being there. Open Style Lab (where I am working) starts tomorrow, so had a scheduling conflict with conference—-couldn’t resolve. On Twitter am @vsouza_STL. I will hash tag all new blog posts during conference with ‪#‎SDS2014‬. And in my own way (through blogging and online conversation), I’ll participate. :-)

Really interesting, Valeria. I don’t know enough of the DS literature to know the counter arguments, but what you write here is persuasive to me. My wife has a chronic illness that I generally do not discuss (by her choice, though I am allowed, as here, to acknowledge it). It functions as disability with drugs as prosthesis, not as disease to be cured. I’ve been thinking about that for, well, for about two and a half years now.

Drugs as prosthesis is an idea I’ve not come across before, I think pain is an interesting example for that. I use a drug constantly for pain control (reminds himself to go change weekly patch when he finishes), but I also supplement it with a TENS when necessary, and on occasion with splinting/bracing, so you can actually have a full spectrum in a single disabled person that runs from pharmaceutical prosthesis, to electronic/electromagnetic prosthesis, to traditional brace/orthosis/mechanical prosthesis, all to address exactly the same issue.

WRT cures and chronic illness, I’m not so sure that medicine has moved away from a focus on a cure. Yes, the pain management programme I attend is focussed on management, not cure, but whenever I run into other doctors or physios (with hypermobility syndrome I tend to collect joint injuries), there’s as often a focus on the idea of a permanent cure, even though that’s not really the way my body works. I’ve been trying to get people to take a holistic approach to my care for five years, in other words look at the entire set of issues, not just one joint, but outside of pain management they just want to look at the one thing they’re convinced they can fix.

I think it really depends on the doc. Also, I’m wondering about possible differences in medical ideology/practice in the U.S. versus U.K. (and other areas of the world as well). Any thoughts on that? (Curious.) At least in my experience and with MS docs, the primary focus is not on “cure.” It really is a kind of chemical prosthetic management, with occur adjustments as necessary. We never bother with “cure.” But not all docs may share that view, etc.

I suppose there may well be US/UK differences – actually I know there are, a US friend and I both had cervical disc issues at same time, her treatment was much more interventionist, mine was ‘Meh, not worth operating’. Though equally it may have been down to difference between treatments appropriate to someone very physically active and someone with a marked mobility impairment. The US system is better if you want to shop around for an approach you like, you tend not to get that flexibility in the UK, but you’re guaranteed a treatment where finances are irrelevant.

My experience has been that approach to cure varies by speciality. Orthopaedics and Rheumatology have both been very cure-focussed in my opinion, and visibly frustrated when a cure isn’t possible. Physiotherapy is even worse, if they can’t fix you some seem to have a ‘blame the patient for lack of compliance’ approach (not had any bad instances of that myself, but have heard stories), and the specialist physio on my pain management team admitted she had to really take hold of herself and change the way she thought about treatment when she switched out of traditional physio – because disabilities like CFS and HMS really don’t fit the conventional physio treatment model. Another problem with physio I’ve found was a lack of joined-up thinking. I’ve been having treatment in the same hospital physio department for 25 years, probably averaging something once every 2-3 years, and I’ve never once seen anything to indicate that they have consulted my past notes – each injury/problem was treated as a separate issue, even though there were common underlying problems. Pain Management, OTOH have been wonderful, not only are they focussed on management, but they do it through the expert patient model, and all of us who did the pain management course remarked on the real difference it makes when the medics treat you as an equal participant in the conversation (needless to say, none of the other specialities did that).

I’m concerned that you are using the imagined experiences of Autistics…it’s better to talk about what you know to avoid accidental strawmanning, I think. I have met many people whose ideas of what the medical model and the social model may mean are quite complicated…and I know this because they tell me, not because I have decided it in my theories… But your work is fresh and enjoyable.

Thank you for your interest in and engagement with my work. While your point is well taken, I disagree that merely providing one hypothetical example of a (possible, potential) lived Autistic experience constitutes “using the imagined experiences of Autistics.” Likewise, I take issue with the particular brand of identity politicking that stipulates that one must have “lived experience” of something to even briefly mention it in any sort of theoretical context. The irony here is that I mention examples of Autistics (culled from literature by Autistics, actually — though it’s my fault for not being more explicit in my citation of these primary sources!) in an effort to be more inclusive and not limit my commentary about “non-classical” forms of disability to chronic illness. It is for the same reason that I occasionally provide brief examples of mental illness: my goal is to point towards prospective commonalities—not reinforce disability hierarchies and/or divisions within the field.

Finally, while I too recognize that many people (within and outside of DS) have varied and nuanced understandings of the “social” and “medical” models, I think it is quite important to acknowledge that the majority of DS scholars (and literature—including the “theory” you dismiss so pejoratively in your comment about my work) maintains an overwhelmingly negative view of medicine and medical professionals. To deny this fact is to reveal ignorance about the dominant texts in the field.

I didn’t mean to be pejorative, I’m sorry. I’m learning how to write more clearly. I think we are on the same side, because what I am also doing is rejecting the legitimacy of the dominance of ‘dominant texts in the field’ and the whole system of enculturation of elite power even by non-elites that makes this be a thing. Even if I were actually in fact ignorant about the texts of domination, I would think my being well-versed in the grassroots literature of the people in the blogosphere who have been denied access to the “peer-reviewed” and pay-walled world of “dominant texts” is not an inferior shadow. In fact, I think it gives me enhanced warrant. This is economic justice (as well as being part of other necessary circumnavigations of kyriarchy). But yes, I also agree, being explicit in naming people whose valuable voices are often erased is a good way to do the work of deconstructing some of the walls of violence I think we both decry. There’s a reason I said your work was fresh and enjoyable. Again, I am sorry I was unclear because I get the impression from your answer that I may have accidentally hurt you and I did not mean to do that.